Gratitude

Gratitude by Nichole Nordeman Send some rain, would You send some rain? ‘Cause the earth is dry and needs to drink again And the sun is high and we are sinking in the shade Would You send a cloud, thunder long and loud? Let the sky grow black and send some mercy down Surely You can see that we are thirsty and afraid But maybe not, not today Maybe You’ll provide in other ways And if that’s the case … We’ll give thanks to You with gratitude For lessons learned in how to thirst for You How to bless the very sun that warms our face If You never send us rain Daily bread, give us daily bread Bless our bodies, keep our children fed Fill our cups, then fill them up again tonight Wrap us up and warm us through Tucked away beneath our sturdy roofs Let us slumber safe from danger’s view this time Or maybe not, not today Maybe You’ll provide in other ways And if that’s the case … We’ll give thanks to You with gratitude A lesson learned to hunger after You That a starry sky offers a better view If no roof is overhead And if we never taste that bread Oh, the differences that often are between Everything we want and what we really need So grant us peace, Jesus, grant us peace Move our hearts to hear a single beat Between alibis and enemies tonight Or maybe not, not today Peace might be another world away And if that’s the case … We’ll give thanks to You with gratitude For lessons learned in how to trust in You That we are blessd beyond what we could ever dream In abundance or in need And if You never grant us peace … But, Jesus, would You please …

Good News

In preparing for my 3-month-scan and labs to make sure the tumor that triggered my transplant hadn’t returned, I found two journal articles.  (Yes, I’m a nursing student who has a penchant for research.)  I read Getting a Handle on Posttransplant Recurrence of HCC and Adjuvant Treatment After Orthotopic Liver Transplantation: Is It Really Necessary?, the second of which I noticed was co-written by the surgeon who performed my transplant.  Very cool.  And regarding my labs, I wasn’t exactly sure what “tumor markers” were, so I brushed up at the National Cancer Institute.

My own personal conclusion was that I had/have a low recurrence rate due to the characteristics of my tumor.  That calmed my nerves, so we were off to a good start.

This morning I had my CAT scan followed by labs to screen for “tumor markers.”  If you’re interested in medicine, check the link above.  If not, suffice it to say they’re something in your blood that can signal whether or not there is a tumor present in your body.  

By afternoon, most of the scans had been read and the conclusions of 3 surgeons were this: (And yes, this was complete news to me.)  No where in any of my tests, labs, reports, etc. did it ever say the tumor (which was found in May) was definitely cancer.  Due to the location of the tumor, it could not be biopsied and diagnosed as cancerous or benign.  Therefore, it was assumed to be cancerous, specifically hepatocellular carcinoma to err on the side of caution.  Remember, it was never in fact proven.  In June, I received chemoembolization, chemo directly targeted at the tumor and not the rest of my body.  When my old liver was removed September 1, some lymph nodes were screened for cancer, and none was found.  To sum all of that up, my tumor may have been completely benign.  Yes, it may have been cancerous, and the chemo may have just cured it. But the catch is this, chemoembolization is rarely successful with just one treatment.  We will never know which the tumor was, so even if I am at risk of recurrence or any kind of cancer coming back, it’s a very small risk.  Because it may not have ever been there.

That was a lot to take in while it was a relief as well.  The day after I had the scan that found the tumor, my doctor said it was cancer.  It would have been nice to know that she wasn’t sure and had no way of knowing from the location of the tumor.

But I digress.

The scans today were completely clean, and because of that and the realization the tumor likely was not ever cancerous, I’m now off the protocol treatment and don’t have to get scanned for another 6 months, then every year for 5 years.  That’s a lot better than 3x/year for 5 years.  And it’s so much better to know that the tumor wasn’t positively cancer.  They can never say never since nothing was proven or tested either way, but the tumor was likely non-cancerous.

Sigh of relief.

So God is good, and while we don’t have answers to a lot of things, I really do believe that everything happens for a reason and works out for good.  Somehow I beginning to believe the people who say I’m a walking miracle.

Thank you for your prayers, Tweets, comments, emails, texts… I felt so supported and at peace today.

Love always,
Amanda

PS – My WBC and platelets are still low (we’re watching them to see what might be the cause) but my liver numbers are all perfect.  I don’t know if they’ve ever been perfect.  So grateful.

Milestones

Wednesday’s Liver Clinic went very well.  It was a good visit with the surgeons (including Dr. Peter!) and my coordinators, Molly and Christine.  Plus, I got some very good news.  I think bringing them a box full of brown butter pumpkin spice cookies didn’t hurt either.  🙂

First off, instead of weekly visits, this was my first “second week” visit, and instead of coming back in another two weeks, they let me schedule my next visit four weeks out!  Yay!

Next, they liked my split-open incision since it’s healing so well.  (Slowly, but surely!)  We’re still doing wet to dry dressings twice a day, and probably will for a few more weeks, but they’re working!

Unfortunately, my Prograf (immunosuppressant medication) blood serum had gone from 5 weeks steady to a quick decreasing, so the docs had to increase my dose from 1mg to 2mg.  I’m not happy about that, but they say it all depends on blood level, so my Prograf side effects shouldn’t increase.  We’ll see.

But more good news – the surgeon who did my surgery wasn’t there Wednesday, so I got to see another (plus my favorite resident Peter!)  Apparently, this doctor was pretty lenient because most docs stick to a 3-months-post-op no driving rule, and some even go towards 4 months, but this doctor told me since I’m off pain meds and doing well, I can slowly ease back into driving again!   At just 6 weeks!  He said to practice driving with someone – just around the neighborhood, etc. to make sure it wasn’t painful and I was comfortable with it, so last night, Mom got in the car and watched me drive… Yes, just like we did almost 7 years ago (when I first learned to drive!).  I was a stellar driver, and pushing the pedals didn’t hurt my stomach, so I passed and am once again a driving citizen.  Hooray!

Oh, and labs – I’m officially onto weekly labs instead of twice/week labs!  My arms will surely appreciate that.  Plus I will be able to sleep in a little later now an extra day a week!  Since the surgery, it seems like every week I’m sleeping more and more, but the docs say it’s perfectly normal and will get better.  I have a hard time falling asleep because of the steroids, but once I’m asleep, I’m gone … and for a lonnng time!

So lots of “ups” on Wednesday.  I can’t believe I’m past 6 weeks.

After each visit, we eat in the huge wide-selection, all-healthy-foods cafeteria, but before we ate on Wednesday, we went to the Clinic’s new(er) Kelvin & Eleanor Smith Rooftop Terrace on top of the Miller Family Pavilion.  I had been to the Clinic so many times and never made the time to get up there, and apparently it had “breathtaking skyline views” and was a beautiful, relaxing place where lots of activities took place like yoga, chair massages…. just sounded nice.  Anyways, when I was in the hospital, everyone who visited me always seemed to go there, the on-hold message I get every time I call someone at the Clinic tells me about it, and I just figured any good, full-time Clinic patient needed to see what it was all about.  Plus, it’s not that “new” anymore, so my absence was feeling pathetic.  It was really pretty – not quite what I was expecting.  It has a serene indoor part and then you can walk outside and see the entire Cleveland skyline.  I tried to take a picture, but no matter where I went, I had to be behind glass and this pole was always in the way.  Anyways, here’s our lovely smog-covered, typical-gloomy-skied city of Cleveland…

And, I had to take this picture of my mom – she looks so cute, doesn’t she?  And then she had to take a picture of me, which is just here out of theory.  It’s not a particular favorite!  I desperately need a hair cut!  (We’ve been handling other priorities lately!)

Yesterday, I went out with a friend to see a movie, and afterwards I went over to her house and played with her boys (the two I’ve babysat – and adored – since birth!)  Then my Poppop and my other friend came over and Mom made dinner.  It’s so nice catching up with everyone and feeling like I’m “a part of life” again.  Each day is getting better.

Here’s me and my boys 🙂

Today I had an appointment with my pain management doctor whom I’ve seen for almost 2 years.  They stopped my fibromyalgia and back pain meds with the transplant, and I definitely need some help now that the focus is off the transplant pain.  She’s head of pain management at the Cleveland Clinic’s Hillcrest Hospital, and she’s also an anesthesiologist.  She’s really good and really kind.  She volunteers with all these youth organizations and really gets involved with presentations, giving back, etc.  I’m so happy I found her. Anyways, she had a cancellation and was able to see me today, and we’re trying to get some fibromyalgia meds back onboard, although it’s so hard because everything I take (even over the counter!) has to be cleared through my transplant coordinator who clears anything questionable with the transplant pharmacist.  The reason is, drugs can alter my other medications (like my antirejection/immunosuppressants) and that could cause rejection, so this new post-transplant life includes being really careful about medications.  It’s annoying, but important.  Also, a side effect of one of the immunosuppressants is kidney damage, so we have to be careful with meds cleared through my kidneys, too.  Thankfully my kidney-related blood levels have been really good, but they’re still very cautious…  (Oh, and the long term steroids can cause bone problems like loss and osteoporosis, and the immunosuppressants make me more susceptible to cancers like skin cancer!  That’s why I don’t like being on these new meds.  But it’s that or die – literally – so I shall cooperate!)

Before my appointment, I shopped at Beachwood, and Mom picked up Panera while I was in with the doctor (yum!), and then she dropped me home where I grabbed my car to exercise my long-missed driving privileges!  I had an interview with a new nanny family, and then I dropped off and picked up my new meds at Target, went to Macy’s, and pretty much wore myself out.  (Who had a feeling that would happen?)

I wanted to share all these great things with all of you who have followed my journey so closely.  Thanks for your care and prayers!  Never ever forget where you started and how far you’ve come.  I know I won’t.  🙂

Amanda

PS – Thanks for all the love – this was a such a sweet surprise this week from my friend and her parents!  Yum!

6 weeks!

It’s official… 

I’ve been living with my new liver for 6 weeks now.

This week has been my best week yet, and I’m really feeling good.

Not perfect, not as good as before the transplant, and my incision is still open (but healing!) but I’m doing so much better than last week, last month, and definitely 6 weeks ago when I had just been through an 8 hour surgery.

Thank you for everyone who has read my updates, said a prayer for me, sent a card or gift… and thanks to the almighty Healer who hears his children when they cry.

Amanda

God is within her, she will not fall; God will help her at break of day.

Psalm 36.5, and probably one for the “top favorites.”  

On another note, yesterday was a really good day. I got to run errands after labs, go out to lunch with my mom and sister, and have a big dinner with my family, including my uncle, cousin, and Poppop!  (Click to see pictures)

Anyways, God hears our hearts, and He hears our (your) prayers.  Thank you from the bottom of my heart for all the prayers you’ve prayed on my behalf and all the love you’ve poured out onto me.

And just to sneak in an update, my homecare nurse came today and was shocked how well my incision is healing.  Keep praying because when it’s healed, I can drive again!  😉

Love,
Amanda

Comments & thanks

I finally got comments working on my blog – please let me know you’re reading!  Today I found out there is a prayer group in Texas praying for me.  Thank you so much.  Words aren’t enough.  Thank you to my aunt who has her prayer group praying, too.  I can’t believe how many hearts care about me and this difficult journey I’m on.  God has sent you my way not by chance, and I am so grateful for each one of you.

Thank you to my friends all over the country who are sending me encouragement via various social networks and emails.

Thank you to the new people I’ve met whether at the hospital as patients or strong shoulders in the Transplant Clinic, new friends I’ve met at Panera or the coffee shop, strong women I’ve met in Bible Study.  Thank you to my new friends at LifeBanc – you’re wonderful, a few special transplant recipients who give me hope and encouragement, and those at TRIO for all of the support I feel from your stories and concern.

Thank you to everyone else for your continued support – the prayers, emails, cards, kind words, phone calls… you are all so appreciated and have helped make this journey just a little easier.  May God bless you abundantly for your sacrifices for my life.

Love,

Amanda

Today was endoscopy day, or EDG day.  With PSC (primary sclerosing cholangitis) comes progressive inflammation and scarring of the bile ducts, yielding cirrhosis, or low liver function.  The uncontrollable scarring causes redirection of blood flow and bile and produces a phenomenon called portal hypertension.  In these cases, most of the liver’s enormous volume of blood gets shunted out the portal vein since the other veins and channels are blocked.  The result is high blood pressure through the vein (since its normally dependent on many other veins and channels as well).  The high portal blood pressure yields esophageal varices (large “balloons” of blood that collect in the esophagus with lack of a place to go), a rerouting of blood in the chambers of the heart, and so much more.

In sum, I’ve had portal hypertension for years, and my doctor monitors it by doing at-least annual endoscopies.  She goes in through my throat while I’m in general anesthesia, and whenever she sees one of these high-pressure varices, or “balloon bubbles,” she puts a tiny, tiny rubber band around it – which later falls off on its own -leaving the balloon nothing but a dead clot to fall away.  The procedure is emminent because of the risk of the varices.  At any moment in time, a single varice could rupture since the volume is just that great.  A patient with ruptured varices would likely hemorrhage before reaching the hospital.  

Then, the oncologist wanted a colonoscopy performed today, too, just to make sure the tumor in the liver isn’t anywhere else, so my own doctor performed that as well.  That part is honestly no big deal.  The worst part is the throat and chest pain after the EDG, and anytime she bands varices, there is a throbbing pain that just won’t stop.  Thankfully, she didn’t see any varices to band today (they have to meet certain criteria to be “bandable”), but there is still a lot of pain from the breathing tube, mouth opener, scopes, and all the bumping around in there.

And so I sit here and sip apple juice and graham crackers, thankful she didn’t find any real varices today.  I’m also thankful my mom was with me, my best friend stopped by (but I was asleep), and Jonathan spent a few hours watching TV on the couch.  (Don’t ask me what we watched – I was out!)

And thanks to you who have been pouring in the cards and sweet gifts… my mailbox hasn’t been empty all week, and I cannot express how much your love means to me.

Until next time…

Today was bittersweet because even though my pediatric GI of over a dozen years, Dr. Hupertz, is still overseeing my case, she had to send me to adults just for the nature of what my disease is turning into.  She’s almost been a second mom to me, and she’s helped me through far more than liver things.  She’s in the first picture with me, and in the second picture is Penny, the OR nurse who isalways there!  I like her because she lets me sneak my glasses into the OR and then keeps track of them and makes sure they’re on when I am awake.  She’s a rule-bender, but she’s a sweetheart, and you know she’s been doing this job forever.  She’s an angel.

So today was my last day, ever, in peds, and that in itself is so scary.